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IBC DIAGNOSED, LETS SHARE OUR STORIES!

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mrs_X_Sunneedazee
mrs_X_Sunneedazee Member Posts: 18

I would love it if all who have been diagnosed with Inflammatory breast cancer would share their story.  Because this form of breast cancer is rare, please post your process of being diagnosed.  Also tell us when you were diagnosed, what treatments you have had, and how you are currently doing. 

I know when I have read about the prognosis of this form of BC I felt like I would be dead within months. I think it would be most helpful for others to be able to read about actual womens experiences....

So here is my story....

 I was diagnosed back in May 2007, when I was 28 years old.  I had been having problems with my breast for almost a year.  I was nursing a baby, so the dr kept on attributing my symptoms to that.  At first my breast was horribly itchy, no matter what I did it itched and drove me crazy.  Then, one day it got really painful and swelled, bright red skin.  Doc said mastitis.  Gave antibiotics.  Got worse.  Ended up in ER with IV antibiotics.  Bright fiery red color went away.  Breast was still enlarged and pinkish purplish bruised looking.  Breast continued to grow and grow.  Nipple inverted, orange peel skin, stabbing pain into my armpit.  Dr said scar tissue blocking the milk ducts is causing the swelling and discoloration.  Skin steadilly gets thicker and covers a bigger area.  Read about IBC on THIS website, said OMG that is what I have.  Demanded an appt. with dr.  Saw him next day, insisted it was scar tissue from milk ducts.  Another month goes by, I don't feel right.  See DR again,  Demand a biopsy.  Refers me to a surgeon.  Have an ultrasound, only see cysts.  Surgeon one wants to aspirate the cysts.  See 2nd surgeon.  He looks extrememly worried.  He checked my lymph nodes in my armpit. Not a good sign.  Gets me in for a mammo the next day.  Mammo takes almost an hour, taking pic after pic after pic.  Then they want to do an ultrasound.....  Radiologist comes in...  This is really serious.  WHAM, we believe you have inflammatory Breast cancer a rare agressive form of cancer...  HMmmmmm  oh really????  Biopsys next day, as well as bone scan...  (I had been going to 4 different drs for horrible pain in my back and hip as well.....  cancer was found there also).  Mets also to a spot in my lung.

Started Herceptin the following Tuesday with Zometa.  Port placed thursday.  More chemo on Monday Taxol.  Have been doing weekly Taxol and Herceptin since.   I have one more treatment, and then I will be moving on to my MRM next week.  Once that heals, I will have radiaiton, and then be on weekly herceptin, um, forever.  Cause that is how long I am gonna live!

Please, please post and tell us about your diagnosis and treatments.  I would love to connect with others who are battling the same monster that I am.   

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Comments

  • shrink
    shrink Member Posts: 131
    edited October 2007
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    Hello Amber:

    My name is Marian.  I went to for my gyn exam in early March of this year - no findings.  I hadn't had a mammography in a year and a half but the gyn felt nothing.  So I scheduled a mammography.  Six weeks later, when I looked in the mirror, I saw what looked like a bruise over my right breast.  There was a thickening under it.  I didn't get alarmed because I thought it was a bruise.  I quickly became bigger, grew smaller, got red and got bigger and smaller again.  This didn't sound like any cancer I knew about.  I went back to the gyn in early May. I had a mammography and ultrasound. She referred me to a breast surgeon who did needle biopsies, core biopsies, a skin biopsy and called me a day later. "Looks like we're dealing with cancer here." The skin biopsy was negative but the radiologist and the oncologist agreed that this was IBC given it's behavior over the last few weeks.  I had blood work, CT scans, MRI, chest x-rays, MUGA etc.  The pathology report stated that I had DCIS, ILC and IDC, nuclear grade 3 tumor (6cm), ER+, PR- and HER2-, "suspicious lymph nodes." Scans didn't reveal spread to other organs (Stage IIIb so far). I didn't have a port inserted since I have "good veins."  So far I have had 4 AC infusions and 2 Taxol infusions.  I'm due for 2 more, then bi-lat surgery, maybe more chemo if cancer is still in my nodes, radiation and an AI inhibitor. I asked (foolishly I think) what would happen if I had no treatment at all and the onc. replied that I would be dead in 6-9 months.  I almost fell off the chair. I didn't think I'd live beyond the first chemo infusion truthfully but the tumor is responding well, shrinking, so that's encouraging. Also, the side effects have been minimal in my case. I'm still very frightened when I look at the stats but I try to live everyday.   It's a beautiful Fall day in Pennsylvania.  When I took my walk today I wondered if I'd be here next year to see the foliage.  I haven't bought many clothes (unusual for me) because I didn't think I'd live to wear them enough to justify the price.  Those are my dark thoughts.  On the other hand, I read a lot about Stage IV survivors many years after diagnosis so this gives me hope.  There's a wealth of information on ibcsupport.org. Since this is a relatively rare form of bc, I don't think there's been a ton of research but let's hope in the very near future there will be more out there for us.

  • Caseysmom
    Caseysmom Member Posts: 70
    edited October 2007
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    Hello Amber and Marian:

    My name is Laura. I was diagnosed with ibc on July 19, 2004 I was 36 years old at the time. I am currently in remission for two years.  My symptoms were so much different than both of yours. I found out after I had my surgery that I was at the end of stage three beginning of stage 4. So with that said here is my story:

    I went to my pcp at the end of June 2004 to see him about a fairly large mass on the outside of my left breast. This was only there for a few weeks. When looking at it he was not sure of what it was so he gave me a name of a breast surgeon and ordered a mammogram.  The following week when I had my first appointment with my surgeon he told me that my mammogram came back negative when he looked at he thought it might be some kind of dermatitis and explained to me that cancer does not grow that fast, but to be on the safe side he wanted to do a biopsy then send me to a dermatologist.  So I asked him when can we schedule it he told me that he would do right now in his minor procedure room in the office.  After he was done doing the biopsy he was able to get me in to see the dermatologist.  I was lucky that the dermatologist office was in the same building.  When I was called back to see the derm he took one look and told me that all we have to do is remove half of the breast and radiate it. (so compassionate) Needless to say I was not happy with him for my surgeon had calmed all of my fears prior to leaving his office. The derm gave me instruction on how to keep the surgical area clean.  He told me to put boric acid compresses on my breast for 15 min two times a day.  I quested him on the boric acid and he told me that this will make the surgical site less painful. (yeah right) Well the next day I did what he directed me to do.  After I did the second compress that day prior to going to bed I took the dressing off to put on some antibiotic ointment well to my surprise all the stitches were gone.  I ended up going to the emergency room 23 hours after my biopsy to be restitched.  

    On July 19, 2004 (day I will never forget) I saw the surgeon for my biopsy results I was very thankful that my sister and sister-in-law were with me.  When the surgeon came in he gave me the bad news that I have ibc.  He asked the pathologist to double check to make sure of the diagnosis.  The path told him because of my age he did run all the test again and got the same answer.  My surgeon had the pathologist send my biopsy to Mayo Clinic to find out if I was HER positive or negative.  I did find out that I was HER negative, negative progestin and positive estrogen. He explained that I would have to go through chemo and most likely have radiation depending if there is any lymph node involvement. (at time of diagnosis I had no swollen lymph nodes).  He referred me to an oncologist that has experience with ibc.  That same week of getting my dx I was scheduled for a mediport and the day after getting the mediport I saw my onc.  He explained to me what my treatment would be 4 large doses of a/c which would be done over an eight week period followed by 12 weeks of taxol.  I started my treatment the following week I was complete done with all chemo the 2nd week of December.  I saw my surgeon a few days after I finished my treatment.  At that time he gave me two options with the pros and cons of both complete mastectomy or lumpectomy.  I asked him about doing a double mastectomy and he told me that since I was only 36 and no family history of breast cancer on either side of my family he suggested to only take the left breast and leave the right just encase if I have any children and I want to breast feed.  I took his advice and decided to have a complete mastectomy with the start of my reconstructive surgery.  I saw a plastic surgeon who told me that I was a good candidate for a tram flap and explained that procedure to me or I could go with an implant.  I decided to go with the tram flap.  I was schedule for my surgery on January 24th, 2005.   I was admitted to the hospital for 5 days however the first 4 days I spent in the recovery room because all the beds in the hospital were filled.  Two days after my surgery the recovery nurse came in to get me up and moving however when she got me up she let go of me and I fell on the side that I just had surgery on.  Not fun the recovery room nurse called the house doctor to come in and take a look at me.  All the house doc did was asked me if I hit my head or broke my hips.  I told him I did not hit my head or break my hips.  He then moved my hips I hit the celling because I had been open from hip to hip.  When my plastic surgeon came in that night she asked me how I was doing.  I told her what happened needless to say the nurse did not call either one of my surgeons.  I found out the night before I was discharged that my lymph nodes came back positive for microscopic cancer.  Five weeks after surgery I was started back on chemo this time around I was given gemzar and carboplatin which I was on for three and half months.  I then went through seven weeks of radiation.  During the course of radiation I ended up admitted back into the hospital this time for 3 blood clots in my lungs.  August of 2005 I was given a clean bill of health, however not even 2 months after I complete my treatment my mother was dx with breast cancer (what a blow that was).  I saw my onc a few weeks after my mother dx.  He explained to me that since my mother was just dx with bc that my risk for recurrent bc was greater and that since I ended up with blood clots in my lungs that he could not put me on tamoxifen and that I would need to have my ovaries removed. (What a blow this was).  So I made appointment to see the gyn surgeon, breast surgeon, and plastic surgeon.  It took some time for them to coordinate their schedules.  I was schedule for this surgery on January 11, 2006.  My gyn surgeon called and wanted to see me the day before surgery.  When I saw her she found out that she could not do a my surgery with the laprocope and had to open my abdomen.  She highly suggested to have a complete hysterectomy so I decided to go with a complete hysterectomy.  The reason I decided to go with the complete hysterectomy that I did not want to have my abdomen opened a third time and that with my luck if I did not go with the hysterectomy that I would end up with uterine cancer.  

    The day after labor day 2007 I ended up having a big scare.  I woke up that morning with my left breast very swollen and red and hot by the time I was able to get to my doctors that day the infection had spread to my abdomen.  I was then given an injection of rocephrin and placed on keflex.  My doctor told me to call him in the morning to let him know if the infection was clearing.  When I called him the next day the infection ended up under my left arm pit.  He told me that I needed to get into the office that day for another injection of rocephin or possibly be admitted to the hospital for IV antibiotics.  I had an MRI done and we found out that it was an abscess causing all of the problems.  As a followup I saw my radiation onc and he told me that every thing was a okay!  I will be seeing my medical onc at the end of this month and I think that he will agree with my rad onc. Yes I have been to hell and back.  I believe that I can handle anything that is thrown at me.  I also know that I will beat the odds of what is given as a survival rate for ibc.

    I do agree that there needs to be more research done on this very  rare, aggressive and ugly disease.  All doctors should be educated on the signs and symptoms of ibc and not brush it off as just an infection.

    Sorry for such a long story.

  • shrink
    shrink Member Posts: 131
    edited October 2007
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    You certainly have been to hell.  I'm glad you're back now.

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 18
    edited October 2007
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    Laura and Marian, thank you so much for sharing your stories.  It is a hellish path we travel, huh!  I think this thread will be great for those who are looking for more info on IBC, because it shows just how different each cancer is....  Knowledge is power! 

  • kimmie39
    kimmie39 Member Posts: 8
    edited October 2007
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    Hi girls,

    Heres another in a long list of same-o same-o bad diagnoses.

    First a little back ground. I was first diagnosed in 1995 at the age of 27. right breast IDC. 3  lymph nodes also cancerous. 6 rounds of ACF every three  weeks, lumpectomy followed by 6 wks radiation. 10 yrs after and I thought I was done with cancer, took out a second mortgage on my house and had extensive plastic surgery to lift my breast and make them the same size (YEA!!) also had a tummy tuck.  Less than a year later an area about the size of a 50cent pc starts getting red on my right breast. I call my gynecologist and they give me an appointment. A week later gyno. says " I dont see anything that worries me but Ill send you to see your general surgeon to see if you need any testing". O.K. Make an appointment (no hurry) I Go to see surgeon He says " I dont see anything that worries me because there is no lump but we will send you for a mammo and ultrasound to be sure since you have a past history" O.K. make me an appointment and of course they are in no hurry. I go for the test and the radiologist come back and says " I dont see anything to worry about" I say look something is wrong. He looks at my breast and says he will look at the tests results again and send his recommendations to the surgeon. I have a follow up with my surgeon and he informs me that the mammo. and ultrasound were both clear and the radiologist doesnt recommend anymore testing so I have 3 choices. 1. Do nothing , wait 6 months and see if there are any changes.    2. Do random skin biopies since there is no lump to biopsy.    3. Have a MRI but bear in mind that the radiologist did not indicate it was needed so my insurance may not cover the cost.   I tell him Im worth it and we schedualed the MRI, and he gave me a follow up appointment  a couple of weeks later. I have my MRI and while waiting for my follow up appointment with the surgeon my breast is  getting worse. I call his office and ask why I have to wait so long to see him and get my results. They see me the next day. At this appointment (which is 3 months from my first appointment with my gyno.) I find out I have cancer in BOTH breast and most likely the lymph nodes on BOTH sides as well.

    Im currently in treatment. I have one more cycle of chemo left and then on to surgery (bilateral mast.) which I might add Im scared about. '

    Anyway my biggest obstacle right now is trying to figure out if I also should have chemo AFTER surgery, Sounds like its determined by whether or not there is still cancer in the nodes at the time of surgery.

    Anyway thats my story.

    Hang in there and post when you need help or support. 

    Hugs from Virginia

    Kim 

  • Anita
    Anita Member Posts: 1
    edited October 2007
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    Sunneedazee, I want you to know that your story tugs at my heart.  I read several of your posts about a week ago when I found this site and have been praying for you since. 

    Many hugs and prayers for you!!!!!

    Love, Anita 

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 18
    edited October 2007
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    Thanks for sharing your story Kim.  You were young like me when you were diagnosed.  I'm sorry you had a recurrence and have to go through all of this again, and I wish you luck with your treatments.

    And, thank you Anita for your kind words.  Thank you for your prayers.  I know I have been truly blessed, and everyones prayers help lift me and help me carry my load. 

    I have surgery tomorrow, Single RMR and a laprascopic supracervial hysterectomy to remove my uterus and ovaries.  I can't wait to have it over with! 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited October 2007
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    sunneedazee:

    Just checking in with you to see how you are doing.

    Laura

  • kimmie39
    kimmie39 Member Posts: 8
    edited October 2007
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    sunneedazee - I knew one of my bc sisters was having surgery on the 25th but couldnt remember who. Sorry

    Ive got my fingers crossed that all goes as smooth as possible and you will be up running about soon.

    I recieved my surgery date (dbl masc. w/node removal)  NOVEMBER 28th

    Sunneedazee - Please let us know how you are as soon as you feel up to it. 

  • jordan54
    jordan54 Member Posts: 2
    edited November 2007
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    Another long story. 

    I was originally diagnosed with DCIS in December 2002.  My routine mammogram showed small areas that looked like pieces of sand. Had a Biopsy-DCIS comedo type.  My surgeon suggested a mastectomy because he felt a lumpectomy would not be enough.  Off to a PS-he sugessted either a TRAM or implants-think on it.  Off to the Radiation OC-he suggested a lumpectomy with radiation-think on it.  Off to the OC-he said go with your heart, no matter what you decide I will be seeing you. 2 months later-Skin sparing mastecomy with TRAM. Surgeon felt he got all the cancer.  Hospitalized for a week. Back to the oncologist-started tomaxifen. OC didn't like the wording of the path report so off to the Radiation oncologist again-You had a mastectomy so you do not need further treatment.(my gut feeling CA not gone)

    Routine follow-up with surgeon and plastic surgeon. I noted my scar started to pucker. I was informed by both surgeons-scar tissue.  I started noticing a rash around the scar. None of my docs seemed concerned especially because I had a rash on my stomach. Rash increasing-back to my surgeon for routine check up. He suggested I see a dermotologist-now it is Feb 2005.  Off to the dermatologist-thinks it is an allergy, asked if I had any itiching or pain-none because of decreased sensation from my surgery.  Try topical cream and return in one week. One week later-rash unchanged-punch biopsy done.  One week later I noted a palpable lymph node under my arm.  Back to dermatologist to get my biopsy results-metastatic CA.  Talk about being thrown for a loop. So I am back to my surgeon-he is not sure how to proceed but he will talk to my OC when he gets back into town. I was informed there was a tumor conference coming up the next week and my case would be brought up.  One week later I get a phone call from my OC.  I needed to have a muga scan, PET scan, port-a-cath and chemo. Now it is April 2005.  Chemo started-Adriamycin, Taxol, Cytoxin for 6 months then surgery. Back to GS- Said he wanted to save the graft and not touch the palpable lymph node because it would not change my prognosis.  Off to get a second opinion.  Saw a breast surgeon who works with CA patients. She recommended a total mastectomy with lymph node dissection and removal of the graft. So I went with the total mastectomy, I just wanted to get rid of everything. 3 out of 11 lymph nodes positive, low estrogen+, progesterone-, HER2+. 34 radiation treatments and weekly IV herceptin for 1 year with periodic muga scans. Started on Arimidex. Finally finished herceptin in Dec 2006. Follow up CT scan showed a node in my lung-keep an eye on it. CT scan in May showed some changes in the node.  Off to a cardio-thoracic surgeon.  More surgery for removal of the nodular-negative markers. Felt a sigh of relief. OC thought I had NED. The words we all want to hear.  Repeat CT scan in August- node on the other lung-keep an eye in it. October I had a PET scan-5 nodes lite up plus nodule in the lung. Thrown for another loop.  I will be starting Xeloda with TYKERB as soon as the OC can get the TYKERB sent to me.  Tears flowing again.

    If anyone notices a rash on their breast don't just keep an eye on it have a biopsy so treatment can be started.  IBC is a very aggressive form of CA.

    Thanks for listening to my story.  God bless everyone and you are all in my prayers.

    Linda

  • shrink
    shrink Member Posts: 131
    edited November 2007
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    God bless you too, Linda!  What an ordeal  Thanks for sharing your story.

    Sunneedazee - thinking of you and hope you're doing well.

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 18
    edited November 2007
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    Linda, I'm sorry you are in our IBC club, but it is good to meet you.



    Thank you for sharing your story. I believe it is so important to get the info of our stories out there, so others searching for answers may find them. I hope that a person searching for answers doesn't have cancer, but if they do, our stories can guide them to get the needed treatment.



    I am recovering from surgery, slowly but surely. I have been in lots of pain and in and out of it, but I think I have turned the corner and will continue feeling better. I could actually hug my kids goodnight when they went to bed. (I had a laprascopic hysterectomy and mastectomy 10-25.

  • motheroffoursons
    motheroffoursons Member Posts: 80
    edited November 2007
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    Sunnedazzee,

    Glad to see your post.  I prayed for you.  Hope you are feeling well.

    You know mastectomy scares non-cancer types.  I am slowly getting to the point where I would like to get rid of both breasts as I feel they are trying to kill me!  Don't know if others feel that way.  I wish now I had a mas. when I had DCIS instead of further scares and still as of yet unconfirmed IBC-limbo land as far as diagnosis.

    Hope you are feeling better and able to hug your kids lots.

  • delby33
    delby33 Member Posts: 2
    edited November 2007
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    Hi everyone,

    Your stories are incredible and you all are very strong.  This story is not about me (at least not yet).  This is about my mother. 

    It has been 22 years today since my mother died from what I now know was IBC.  I didn't know it then.  I have only become aware of this since exploring the internet and reading sites about IBC.  Unfortunately 22 years ago there wasn't much hope.  She had chemo and radiation, but it had progressed to the point of no return.  She fought it very bravely but only survived 9 miserable, painful months.  I remember her telling me -   I just want ONE GOOD DAY.  That's all I want.   She never got it and I prayed for her to die and felt guilty afterward.

    I just recently had a biopsy of a suspiscious looking area in my one breast.  There was no difined tumor or mass, just more density and shadowing as described in IBC.  I am very fortunate that my biospsy came back negative.  I am extremely thankful to my doctor for moving forward with the biopsy procedure.  I now have peace of mind and since I have done my own reasearch on IBC I am totally aware of the signs and symptoms.  I WILL educate anyone who will listen.

    God bless you all with great success in your treatments.

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 18
    edited March 2008
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    Thank you Delby.... I am glad that your biopsy was negative. Thank you for sharing your mother's story. What a painful experience.... I am so glad that treatments have progressed from what they were, but feel so terrible for you and your mother to have to suffer. I have had many good days since my diagnosis almost 6 months ago. My prognosis is good, even though I have stage 4 cancer. I hope to be here many years until a cure is found!

  • kimmie39
    kimmie39 Member Posts: 8
    edited November 2007
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    Delby - Im so sorry to hear your painful story. Unfortunately what happened to your mom is still happening TODAY.

    Many docs of all types STILL do not know about IBS. I experienced it myself and Ive read posts from others who had a very difficult time getting diagnosed. Ive even written a few who are now stage 4 (there is no stage 5) and they may have been treated earlier if the docs they consulted  hadn't kept putting off important test.

    Thanks for sharing and helping to get the word out.

    Kim 

  • delby33
    delby33 Member Posts: 2
    edited November 2007
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    Kimmie,

    Thanks for your kind words.  I will never forget what my mom went through in 1985.  I'm sure that 22 years ago the doctors didn't have a clue about IBC treatment because nothing helped her.  And although I saw her just getting worse and worse, I still believed that there was some kind of treatment out there that would make her better.   Even pain control was lacking at that time.  She really suffered.

    It is very encouraging to hear the progress that has been made today.  There will be a breakthrough someday, I am sure.  Right now people need to be educated about this disease so they can get early treatment.  I am trying to educate friends, family, and anyone else about this terrible disease.  Sounds like everyone here is also.

  • amandaj
    amandaj Member Posts: 3
    edited January 2008
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    Hello all!  I am here to share my tale.

    I was diagnosed in November 2006 with IBC at the age of 25.  I noticed that something was not exactly normal with my right breast after it became slightly swollen and my nipple became inverted.  I went to my ob/gyn on Monday afternoon, November 6, who immediately sent me to a surgeon.  I had my first mammogram and ultrasound that afternoon.  On Tuesday, I went back to the surgeon for a biopsy, where he confirmed before the tests even came back, that I had IBC.  I met with my oncologist on Thursday and we discussed the possibility of going to a specialty clinic at MD Anderson Cancer Hospital that had just opened for IBC.  He made me an appointment there for the following week. 

    In Houston (MD Anderson), the doctors re-tested everything and I found out that it had spread to my auxillary lymph nodes.  I went in for port placement and the beginning of chemo on November 22, a mere three weeks after diagnosis. 

    I underwent two rounds of chemo (6 months) having treatments at home but traveling back and forth to Houston every few months.  I then had a bilateral mastectomy in Houston and flew home 2 days later.  The bilateral part was my choice, but one that I have never regretted. 

    I chose to stay home for radiation therapy, which was twice a day for 6 weeks.  Needless to say-the therapists and I are wonderful friends now! Afterwards, I was charred, but ready to begin life without some form of treatment.   I am on Tamoxifen because I was Er+ and Pr+ and have check-ups here at home and in Houston every 3 months. 

    Recently, I had plastic surgery (tram flap) to reconstruct my breasts.  Once into the procedure, my surgeon learned that there was a tunnel inside that never healed from my mastectomy.  It was quite large and filled with fluid, which coincidentally could have aided in my developing lymphedema.  I had to go back for a second procedure to clean out the tunnel and am now attached to a wound vac for several weeks to help the area heal from the inside out.

    This summer, I will be having a follow-up procedure to make my new breasts exactly as I want them (hopefully!) I know that this has been a hard road for all of us, but I have learned much from my experience and have met so many wonderful people throughout my journey.

  • DianeE
    DianeE Member Posts: 30
    edited January 2008
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    Hello Fellow IBC Ladies,

    I am finally reading these postings able to have hope.  My story of diagnosis is similar to yours.  In June 2007,  I started running with a friend and told her " I need a better bra...my boob hurts when I run." One week later it still hurt a little, but more obvious was that it was larger than the other.  Two days later, it stared getting red and hot.  I went to my pcp on a Friday, had an ultrasound that showed diffuse areas of inflammation.  Was scheduled for a mammo the following Monday.  This showed 4 areas of concern in addition to what was on the mammo.  I was sent directly to a surgeon who told my husband and I to prepare for the worst.  An MRI and sterotactic biopsy followed that week which confirmed idc, grade III, with a little DCIS mixed in.  We saw the oncologist Monday and had a PET scan which confirmed lymph node involement with what looked like a 3cm node and a smaller 2cm node in the axilla and possibly an enlarged internal mammary node.   The day my mediport was placed, the surgeon took a skin biopsy which was negative.  I have read different opinions on whether skin biopsy has to be positive to be IBC, my onc says no. 

    I have since had 6 treatments of TAC (taxotere, adriamycin and cytoxin), a double mastectomy with lymph node dissection and am currently doing radiation to the chest wall, axillary and above the collar bone area.  I read many journals that women had more chemo if positive nodes remained.  I still had a .8cm positive node but was told no more chemo. 

    I feel more anxious now as I near the end of treatment than I did going through it.  I will go on tamoxifen and probably one other drug when radiation is done.  I know the phrase of live every day and not let this beast fill our minds but it is hard.  My kids are 12 and 9 and it can be overwhelming to think I might not be here for them.  I even went to the book store and found myself looking at books to buy for them on marriage, parenting, how to pick a college etc. but I stopped myself and realized they can learn those things from me, not a book.

    So my IBC sisters, any advice or ray of hope would  be much appreciated. 

    Stay strong everyone. 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited February 2008
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    Diane:

    Prior to my mastectomy I spoke with my surgeon and onc to find out what the next step would be after surgery.  They both told me it would be radation however if I had more than one lymph node come back possitive I would have to do more chemo.  I had 17 lymph nodes removed and 9 of them came back positive for ca.  I went on to have another 3 months of chemo then 7 weeks of rads.

    I have been in NED now for two years.  I know that it is hard not to think about this beast but I was given hope from my cousin who went through cancer treatment she has been in NED for over 10 years.  She tells me that it will take some time but you will stop worrying about this beast.  Her advise to me was listen to your body it will tell you when something is not right and to get it checked out. 

    Hugs

    Laura 

  • DianeE
    DianeE Member Posts: 30
    edited February 2008
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    Laura,

    Thanks for your words of wisdom.  I have only 10 more rads to go and I am hoping that once that is done I will have less constant reminder of what is wrong.  One of the hardest things for me is that through much of this, I look pretty good, feel pretty good and have continued on with life.  So each time I am brought back to reality, it is almost like starting the acceptance over again.  The cancer diagnosis has taught me very valuable lessons in life and I am appreciative to have the chance to change, grow and love on a different level because of it.

    I pray for your continued good health.  Thanks again for sharing.

    Diane

  • mrs_X_Sunneedazee
    mrs_X_Sunneedazee Member Posts: 18
    edited March 2008
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    Diane, I am so glad you shared your story with us.  Good luck with your continuing treatment!

    All the best!
  • IBCSHELLY
    IBCSHELLY Member Posts: 5
    edited February 2008
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    Thank you all for sharing your story.  I was 38 and it was Feburary 2007 when I learned the terrible news of stage 3 inflammatory breast cancer.  I was heartbroken as I am a mother of a 8 and 10 yr old.  I still fear that I won't get as much time with them as I want, and get sad at times when I see grandparents with their grandchildren.  I hope that I have a taste of those days.  Overall I feel good, I had chemo, bilateral mastectomy, radiation and now am on tamox.  I just got results of clean scans, but need to have a d & c for polyps on my uterine lining, I may need to stop tamox and go on to something else.  Overall I was pretty positive throught this nightmare and had wonderful support.  I think I'm having difficulties letting go of the fear and stepping back into my normal old life.  I feel anxious at times.  I had 6 out of 7 lymph nodes positive post chemo and this haunts me.  I hope this roaring fear will become a whisper as time goes by.  I'm trying to find an outlet and have been writing a lot, which has been very theraputic.  Overall I've learned a lot, live life fully, love entirely and smile always.  I hope to find my way soon and give back somehow to all that helped and prayed for me, I had so many earthly angels here.  I couldn't have made it through without them.

  • evita
    evita Member Posts: 2
    edited February 2008
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    This story is about my mother.  On January 2, 2008, a Wednesday, she noticed a red rash on her right breast.  She went to her pcp the same day.  He was not working that day and she ended up seeing a nurse practitioner instead.  The nurse practitioner said that it was probably an infection and sent her home.  The next day, Thursday, she was talking by phone with the nurse practitioner about another issue and mentioned that her breast had gotten worse; immediately the nurse practioner said "I am scheduling you for an emergency mammogram."  She went for a mammogram that day which showed a suspicious tumor so they scheduled her for a biopsy of the tumor, lymph nodes and skin the next day, Friday.  All were positive and she was diagnosed with Inflammatory Breast Cancer, stage IIIB, the following Tuesday after pathology reviewed the slides.  Three different teams at three different hospitals have recommended that she proceed with chemotherapy (ACT) every other week for 4 months, have a masectomy/lymph node disection, radiation once a day for 6 weeks and then hormone therapy for 5 years (she is estrogen positive).  She had a port put in and had her first round of chemo last Monday, February 4th.  She ended up in the emergency room on the evening of February 12th because she had a fever; they gave her IV antibiotics and wanted to admit her to isolate her from germs but she said that there are probably more germs in the hospital than in her home so they let her go home but she is not allowed to leave her house.  Her blood count was 700 when it should have been between 10,000 and 20,000. 

    I am so thankful that my mom was diagnosed and is being treated so quickly.  I had never heard of IBC before and was blind sighted by this news.  I never knew that a rash on your breast could be cancer and I have been telling everyone I know about it.  I hope women in the future can be diagnosed as quickly as my mother and I pray that she will survive all of this.  All of your stories are inspirational for me and really help.  Thanks for sharing.

    I am hoping and praying for everyone.  I wish you all good health and lots of hugs! 

    xxoo,

    Denise 

  • DianeE
    DianeE Member Posts: 30
    edited February 2008
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    Denise,

    So sorry you had to join the club with your Mom but it sounds like she has great people looking out for her on her medical team and at home.  I had the exact treatment.  Is your Mom getting Neulasta the day after her chemo to support her bone marrow?  TAC is some pretty powerful stuff and it will help keep her counts up. 

    I will add her to my list of people to pray for, and you.  Please keep posting.

    I have 5 rads to go and then tamoxifen and am doing pretty darn good.

    Take care,

    Diane

  • nixieschaos
    nixieschaos Member Posts: 2
    edited February 2008
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    Oh good grief guys...This is crazey!!! Who said it was ok for us to have to deal with this!!!!

    I am stage 4 inflamatory ductal carcenoma with metastisis to the bone. My right rib, left hip, sternum, and somewhere else...my thigh? Hell, I can't remember...

    I had a small lump in August of 06. Had a mamogram and needle biopsy. Both came back clear. My doc said to just watch it, and if I noticed it coming back, or any changes, call him.  One year later the lump came back with a vengance. My nipple inverted and just a very 'full' perky breast!! I went to my doc, he sent me for a mamogram, and to the surgeon, (who's office staff are idiots...I didn't get an appt with him for WEEKS after my call. They were not organized enough to pick up their phone half the time, several times lost the paperwork my original doc sent, blah blah blah. I finally got in and was scheduled for a lumpectomy the following week. October 4. That day, my husband and I decided to take control of our health and knowing that I likley had some kind of breast cancer, we searched out cancer fighting foods and began our new lifestyle. The surgery went well, the drugs were great, but the fun was over on Oct. 10 when I got the results of the biopsy. Inflamatory Ductal Carcenoma. My surgeon said it likley has spread and said a masectomy was inevetable. He sent me to his buddy, the radiologist, who examined me and ordered a pet scan, CT scan and Bone scan. He told me I was a stage 4, with mets to the bone...I remember sitting there saying "wow" over and over.  I asked what the survival rate was and was told 20%...I asked, "well what happens to the other 80%?!!!!!" Duh. So I asked what needed to happen to be sure I was part of that 20%. The doc looked at me stupified, so I told him what I was doing, food, wheatgrass, all of it. He smiled and said, "eat whatever you want". And with that I promptly discounted anything he said about my odds. As my husband says, "stage 3, stage 4, stage right,  stage left...we are going to beat this thing". (he is my hero) (my husband...not the doctor). So on to the oncologist who was very realistic, but very positive, and a bit mystified at my sense of humor...So the Chemo began. Cytoxin, Adrymiacin, Zomeda. I started that Nov 4. Tues, Feb 4 was my last treatment, on this cycle, or whatever you call it. In the meantime, though my tumor markers are great. I was 54 when I started and since I have been at 23. yay! My mass in my breast is GONE (the doc didn't believe me) she examined me, I had an ultrasound, and was told on the 4th that a masectomy is no longer necessary. Just a few doses of radiation. I have been taking a quarter cup of fresh ground flax daily, Mon Avi (asagi), the Amazon Protocol, Cats Claw, Pau d'Arco, coral calcium, oh, what else...I think the chemo is horrible, but I believe in my heart, that if I didn't concentrate on getting my body strong in advance, and keeping it strong, I wouldn't do as well on the Chemo as I have. no missed work, other than for a few hours , on my treatment days, and I go straight to work after. (my company is awesome...they know I am going to be loopy, and just laugh at me when I am). For about a week after my treatment I know to get home from work and just chill. I go to bed, snuggle in and watch tv. My husband takes over, feeds the kids cereal, brings me sprouted grain toast with vegan butter, and is just a trooper. My kids know exactly what is up and both said, when i told them what the doc said about my odds, "well, you are going to be in that 20%" so matter of fact, no doubt in their amazing minds. They are 7 and 13. Both girls. At every opportunity, we have fun with this thing. When the first clump of hair fell out, we got together and my family shaved my head. We laughed our heads off. I have a different color wig for every day of the week, and I have NEVER DOUBTED FOR A SECOND THAT THIS IS A HICCUP THAT I WILL OVERCOME. I will scan and get you all an article about positive attitude. I get up in the morning and put on my make up, put on my hair, put on my clothes and go on with my life, and laugh my way through the difficult times. The only problem I see is that I screwed my self at home with my husband and kids. I have been strong instead of milking it , so I still cook (about 3 - 3 1/2 weeks out of the month), clean, shop...blah dee dee dah.

    I begin Taxol and Herceptin on the 25th. Once a week for 12 weeks. Yahoo. I want this crap out of my body by summer...I have plans.

    I wish you all strength, humor, FAITH through it all. We are warriors, ladies, and this disease has invaded OUR world.

    Oh yeah, I forgot to mention I am 46, and I think this thing has pushed me into early menoupause. The hot flashes are really interesting.  

  • evita
    evita Member Posts: 2
    edited February 2008
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    Hi DianeE,

    Yes, my mom did get Neulasta to help with her blood count the day after her surgery.  They tested her blood count again on Friday and it is up again which is great to help her fight off infections but her red blood count is still low so she is very tired.  She goes for her second chemo on Monday.

    Thanks for adding her to your prayer list! I really appreciate it. 

    I am so sorry that you have to be going through this and I send you healthy thoughts and energy.  And I am glad that you are doing darn good!  Good luck with your 5 final rads and with the Tamoxifen.  My mom will be taking Tamoxifen after her rads are finished but we have a long time before that. 

    Thanks for your response!

    Denise

  • NONE
    NONE Member Posts: 10
    edited February 2008
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    I just sat here and read every one of these posts. It is so scary! I seem to see different tests, etc that found IBC.

    I was dx. w/IDC in 04 at age 63. Lumpectomy w/clear margins - 16 nodes removed/ all neg. 36 rads w/boosts/er & pr pos/ Arimidex for 5 years. 

    Maybe some of you are familiar w/ my posts - especially Binney.

    I got hit by a door (no joke) about 2 -3 months ago  on the affected breast - a bruise and they said it may take a long time to dissipate.

    2 - 3 weeks ago the discoloration started down the side of my breast. I had a diagnostic mammogram yesterday Mon. 18th. and an ultra sound. The Radiologist came in herself and told me they could see nothing in the tissues of my breast and to follow up with the Dr. They even put something like a clear hockey puck on my breast and said it allowed the machine to read my skin better.

    The Dr. is thinking dead tissue from the trauma to my breast. I don't see him until the 29th. The nurse said to watch it and if it became worse rapidly to call.

     This breast has been swollen and never went down since rads. They tell me that happens with some ladies.

    It has not gotten any worse in 2 - 3 weeks and I am 67 now. It seems all of you are much younger.

    Now, after reading all this --- I am wondering -- if they are missing something.

    Two years ago I had a rash. Dr. did a punch and skin biopsy - even sent it to California for special testing (don't remember what - but think it was for IBC) everything came back clear and we decided that it was an allergy to lavendar lotion - because he put me on a round of predisone and it went away - never to return.

    Sorry this is so long but from your experiences and knowledge -- what do you think?

    Joan

  • IBCSHELLY
    IBCSHELLY Member Posts: 5
    edited February 2008
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    I posted earlier, but really did not get into the how I found my IBC.  I woke up one morning, January 13, 2007 and took a shower, as I was rinsing my hand ran across a huge lump at 10 o'clock on my right breast.  I was leaving for vacation the next morning so did nothing until my return.  My lump was big enough to be felt by anyone and seemed to appear overnight.  I saw my gyn upon my return and she said it felt 6cm to the touch!  I got an ultrasound and mammo that day.  The ultrasound  did not show the typical cancer characteristics, no shadowing.  I was told that it was probably something benign, or rare.  My mammo also did not show anything to be concerned about.  The lump was a mass, the size seemed to be measured much smaller than by touch, and it flattened nicely.  I was told it would have to be removed because of the size, however "There was nothing there to go home and bite my finger nails over".  The time between my ultrasound and appointment with my surgeon I started to get the red rash, flaky skin and flattening nipple.  I then went on the Internet and found out about IBC.  I was terrified.  I called my surgeon and told the receptionist about my symptoms.  She asked if I would like to postpone my appointment until my rash cleared up!!!!!!  I called a nurse coordinator who was able to bypass the receptionist and get my appointment moved up.  Luckily the surgeon acted quickly and I had an ultra sound guided biopsy immediately.  At first I was told I had invasive ductual carcinoma.  My surgeon did not do a skin biopsy, but said that the dx of IBC was more of a clinical dx, a skin biopsy could not clearly confirm dx.  It would be possible for the biopsy to be negative and still have IBC.  Based on my symptoms he then dx me as IBC, it was then confirmed by two other cancer centers.  I then received chemo, 4 and 4 , then bilateral mastectomy (I chose to remove my unaffected breast), 37 rads and currently on tamoxifen.  Although the Internet sent me into a tail spin initially, I really feel that I at least was pointed in the right direction and got treatment immediately.  This could have saved my life.  I always felt I got a terrible cancer but found it and received treatment quickly.  I wish more "front line" medical staff (receptionist, nurses, mammo/radiologist techs,...) were more educated about this cancer.  It is rare, and many have never heard of it let alone have seen it.  If anyone questions that this may be something they have they should seek second, third opinions ASAP.  In my experience though, the symptoms occurred quickly and seem to worsen at a quick rate each day.  I think that is what made it terrifying.  I could visually see my body changing each and every morning.  Today I have clean scans and am praying that they stay that way.  I was told I have 50% chance to have it come back most likely to my bones.  This is hard to live with and I know there are worse prog., worse cancers, but this is scary.  I also get panicked at times when I pick up an article about this cancer and it seems everyone celebrates the strides that we are surviving 15 years.  I know there was a moment I was worried about 1-5 years, but at 39 and two children 15 years is not long enough.  I keep telling myself that were are being treated 15 years later and technology has changed, treatment has changed and more and more are getting educated about this, so no one know what the typical prog is today.  I try to live the best today, but I still have moments of being terrified of the IBC monster.  Together lets kick his butt!!!!!

  • NONE
    NONE Member Posts: 10
    edited February 2008
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    LADIES,

    I POSTED MY RESULTS ON THIS THREAD  24 HOURS AGO AND HAVEN'T HEARD FROM ANYONE --- MEANWHILE --- NOTHING LOOKS ANY WORSE --- EXCEPT THE RED AREAS LOOK BRUISED NOW SINCE THE MAMMOGRAM --- NO WORSE - NO BIGGER AREA.

    THANKS,

    JOAN